Work Package 3 (WP3)
Work Package 3 is currently closed for recruitment.
The HERITAGE study is divided into 3 work packages. WP3 is led by University of Leicester researchers. It involves three key elements:
- an interview study;
- an observation study;
- and a series of group workshops called a ‘Quality Improvement Collaborative’ or ‘QIC’.
These elements have been designed to help researchers understand:
- how Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) services are running;
- how staff manage changes to their service;
- how patients experience a service;
- and how non-patients manage their condition and experience access to support.
Who can take part?
To take part in work package 3, you must be:
- Aged 18 or over
- Able to provide informed consent
- Able to communicate in English
- Have received a GP diagnosis or self‑report LC/ME/CFS symptoms
- Have not received any specialist NHS LC/ME/CFS services in the last three years OR
- Are currently using, have been referred to, or were recently discharged from NHS specialist LC/ME/CFS services at HERITAGE study sites (Leeds, Leicester, Hertfordshire, Cornwall)
- Have had LC or ME/CFS symptoms for 2+ years
- We will also invite staff working in Long COVID and/or ME/CFS service at the four project sites to take part.
If you are connected with one of the Heritage study sites, you could:
- take part in a one-off interview (with breaks and/or split over different days) and/or
- allow us to observe your appointment with your clinician and/or
- become a member of the Quality Improvement Collaborative.
- OR if you are NOT accessing specialist services you could take part in an interview.
Interviews
Individual interviews will be conducted with patients using specialist services for LC/ME/CFS, NHS staff, and people with LC/ME/CFS who are not accessing services. We will recruit staff and patients from each of the four NHS sites participating in HERITAGE (Leicester, Leeds, Hertfordshire, and Cornwall). We also aim to recruit people with LC/ME/CFS NOT accessing services from across the UK.
Observation study
With consent, researchers will be either stationed at the NHS services or will be in attendance at patients’ virtual appointments.
The observation study will provide the research team with an understanding of the four project sites based on their direct experiences of them. We aim to understand clinical pathways and patient journeys.
We hope to gain insight into how services are being delivered by staff and accessed/experienced by patients.
Quality Improvement Collaborative (QIC)
Up to 30 people (staff, patients, researchers) from each of the four participating sites will be involved in the QIC. The QIC will involve 10 x two-hour group workshops (held 6-weekly online).
The purpose is to talk about what makes an effective LC/ME/CFS service and what might help/hinder this.
The QIC aims to develop and test a set of ‘guidelines’ called a ‘National Service Framework’ (NSF). It is intended that this framework will be used by services in the future, acting as a guide for best practice, and helping to shape effective LC/ME/CFS provision.
Meet the Leicester research team
Dr Gemma Hughes leads work package 3 for HERITAGE.
She is a social scientist who uses qualitative methods to research the social and political organisation of health and care. Gemma is Co-Director of the Centre for Healthcare Innovation, Policy and Management at the University of Leicester School of Business. She is also Associate Professor of Healthcare Management and Co-Editor-in-Chief of the Journal of Health Services Research and Policy.
Dr Jo Alexander leads the interview and observation studies as part of HERITAGE.
Jo is a Chartered Psychologist with twelve years’ experience as a qualitative researcher. Jo has extensive experience working on health and social justice projects involving sensitive topics and marginalised communities.
Kate Kontou leads the Quality Improvement Collaborative and the National Service Framework as part of HERITAGE.
Kate is a Respiratory Physiotherapist and has extensive experience of working with Long Covid patients clinically. Kate is nearing completion of her PhD as part of the Leicestershire Healthcare Inequalities Improvement Programme. Prior to commencing her PhD, Kate was the Clinical Programme Manager for Sheffield’s Long Covid Rehabilitation Hub.
Interested in knowing more?
If you have any questions, do feel free to contact the Leicester research team: [email protected].
You can also take a look at the Participant Information Sheet for a fuller description of work package 3 research activities.
Participant Information Sheet for Patient/Public Interview
Participant Information Sheet for Patient/Public Quality Improvement Collaborative (QIC)